DRW raising funds – please give details

I received an email today from David Carlson by way of Disability Rights Washington.

The letter comes on the heels of another report they just published regarding the issues at Rainier School – a state-operated residential habilitation center (RHC).

 

Rainier School Walkway

 

Stand with DRW. Let’s work together to stop abuse. Make a donation today.Washington must invest in smarter and safer supports for people with disabilities.

DRW fund raising for abuse

 

It is a well-known fact that DRW is against any type of congregate care – regardless if it’s a person’s choice or not and personally I would question what the real motive is behind this fundraising campaign.  What are the goals and for what purpose?  The plea is quite vague.

Is this a general donation to DRW or are the funds going to be earmarked for more community supports, training and caregiving staff to provide more appropriate care to those at Rainier?

I have asked these questions to DRW but I have not received an answer.  Since they block me from participating on their social media pages I have little hope of the question actually being heard and less of it being answered.  Maybe someone else would have better luck.

Please let me know if you find out any information on this fundraising campaign.

The Last of the Institutions – corrections to investigation

Update January 7, 2016 regarding inaccurate data used in the DD Audit by Washington State Auditor – see red notes below

Corrections and clarifications are needed by Susannah Frame from King 5 News regarding her “investigative” series “The Last of the Institutions.

Ms. Frame and Russ Walker, Executive Producer King 5 Investigators, have both been notified of these issues and have been given more accurate and objective data and research.  Our hope is that they review the information and research they have been provided and produce a more accurate portrayal of the very complex issues involved with the care of our citizens with intellectual and developmental disabilities.

  1. DDA Case Load and Costs Oct 2015 with Explanation – the reporters failed to mention that the costs attributed to the RHCs actually include costs for an average of 65 “community” clients who utilize the RHCs for short term stays, respite care, crisis care and other services.  This link has the explanations as provided by the Communications and Performance Unit Manager at DDA.
  2. These 65 clients are a non-duplicated number each month so in reality there could be 780 community clients who have their care and services billed to the RHC.  When looking at it this way it is clear that the RHC serves those in the community just as much as it serves the permanent residents.
  3. The DD Performance Audit is riddled with inaccurate data and has failed to capture much of the critical information needed to run a real performance audit.  Information about some of the issues can be found on this website under DD Audit.
  4. The DD Audit also uses resources that non-existent.  For instance, the DD Audit states they used the National Core Indicators Consumer Survey for Washington State 2009 -2010.  Washington State did not participate in the Consumer Survey by the National Core Indicators for the years 2009-2010.   Still trying to locate the data and the report the DD Audit team used for their information.
  5. In addition to questionable resources being used, the National Core Indicators are biased in their ability to capture the voice of those with more profound levels IDD and/or pronounced communication impairments. This population is excluded from the survey
  6. The NCI data is not a “national average” as reported by the DD Audit report.  The survey is only an average of the 16 states that voluntarily use the survey.

 

Response from the Human Services Research Institute in answer to my questions about our State Auditor DD Performance Audit which incorrectly referenced the NCI data for their audit.

In the past, WA collected the Adult Consumer Survey data during a time period that crossed over two separate NCI collection years – between Jan 2007 and Dec 2008.  (see below email from Lisa Weber, PhD) 

Because of this, the data could not be included in the national averages for the year 2009-10.  WA was issued a separate state report on these data (see attached.).

However, these data were included in the chart generator for the 09-10, but are NOT included in the NCI average on the chart generator for that year.  When you look at the data on the chart generator from 09-10 for Washington, please keep in mind the circumstances described above (especially if when comparing to the NCI average.)

Your question brought to my attention that this information should be noted in the chart generator for WA for that year.  I will work on getting that info added.

Referenced email from Lisa Weber, PhD (Washington State):

The attached file contains our data from the NCI Consumer Interviews.  There were 545 adults who participated in a Consumer Interview.  The interview responses and feedback forms are store in separate Access databases.

We have a two year data collection cycle, so this data was gathered between Jan 2007 -Dec 2008.  It was all gathered using the old version of the interview form.  We modified the data entry forms a bit to cover our additional questions and to make the data entry easier for our quality assurance staff, but the numbering of the NCI items in the tables has been left intact. 

Please write to Susannah Frame at sframe@king5.com and rwalker@king5.com to express concerns regarding the lack of objective reporting in this investigative series.

Is Washington State “decades” behind the times?

This has been an interesting week for TV Investigations into issues of care for our citizens with Intellectual Disabilities.

One deserves to be heard and is a real investigation into real and current issues of abuse and death of an innocent man who happened to live with an intellectual disability.  Well, the other report, is not really an investigation – at least not yet – but looking into what happened in the institutions over 40 years ago with video of the horrible conditions in bygone years.

Kudos to Tracy Vedder from KOMO News for her investigation into the death of Jessy  Hamilton and the total mistreatment of him while under the care of the court system.  Jessy’s death is a tragedy and could have been prevented if the judge, lawyer, Cetralia Police Department and the Developmental Disabilities Administration were capable of doing their jobs.

lhttp://www.komonews.com/news/investigations/AutismDeath.html

On another station, Susannah Frame of King 5 News has started her investigation series titled “The Last of the Institutions” with this video.

http://www.king5.com/story/news/local/investigations/2015/11/03/washington-state-developmentally-disabled-residential-habilitation-center/75065984/

Unfortunately, the information that Ms. Frame has shared is decades behind and not factual.  She has gathered her information from biased reports and has chosen to use video which does not depict our state’s therapeutic communities as they are today.  She has chosen to show one campus from a back gate separating the campus from a neighboring park – the only fence she could find on the campus.  When questioned about this blatant misrepresentation of what the campus looked like she wrote “it was the only public space they could find”.  Ms. Frame ought to know better – the campus itself is public property – no gates or fences – she could very well have chosen a setting to show what the campus actually looked like.

Washington STate DSHS did make a clarification of this shot on a comment on the King 5 Website:

DSHS Clarification of Fircrest Video by Susannah Frame

Ms. Frame states that there will be more coming in which she will delve into the various issues more thoroughly.  My hope is that she has facts – not just wishful thinking.

I will be following the “investigation” closely and adding comments here and on King 5 Facebook and website.  I will provide facts and resources.

The issue is not “community” vs “institution” but about how are state can provide quality care to those who need it bases on their support needs and their choice.

We are way ahead of other states but we do need to have better quality of care, better oversight in the community, better pay for caregivers and better training and support.  Continuing to keep the “community” vs “institution” issue as a focus will only detract from what we really need to look at and investigate.  This is irresponsible reporting.

Is our state allowing clinical trials on our most vulnerable citizens without an ethical review?

Human Subjects Research being done on our most vulnerable citizens with no consent or ethical review.

Senator Adam Kline is proposing legislation, again, which is an experiment on our most vulnerable citizens.  Why are we allowing this happen right under our noses and why aren’t more people calling him and others out on this unethical practice?

The year 2011 saw passage of a bill which legislated age discrimination in violation of the US DD Act and the US Supreme Court Decision Olmstead by not allowing those 21 and under to receive the life saving and life sustaining services in the Residential habilitation Center (RHC).  This bill also called for the closure of one of our state’s RHCs and froze admissions to another one.  There was one negligent death just one year ago of an individual who was evicted from his  RHC home into his “own” community home.  He suffered needlessly due to incompetent and untrained caregivers before dying from swallowing laundry detergent which had been stored on the counter in a milk carton.

Now, Senator Kline is again pushing our DD Service System Task force to run more experiments our most vulnerable.  He is advocating for closure of another RHC (he states 360 people – which is the number of people who reside at Rainier School) in the quote below transcribed from the Task Force meeting on October 9, 2012.

“You’ve got some number of families – of those 360,  would want to have their loved on in a RHC, receiving the kind of care that they have and their choice is in “hither or yon” or in the community.  The whole point of sub F (part of legislation that Senator Kline is trying to get passed)– take a look at it – is to guarantee as best we can – that the treatments – we spell it out – medical, nursing, dental, behavioral, mental, habilitation, employment, day support, that those, that the degree of applicability in the RHC is met in the community above and beyond what the residential provider provides.

So, the point is there may be some people, there will be some people for whom, a small number, for whom it will be more expensive to provide a vast needed bundle of services and supports in the community more expensive than it would be in the RHC.  I get that – for a small number of people and we’ll do it because for the much larger number of people, the same or better services can be provided at less cost and we can eat into that 13,000 waiting list.  Okay, there is an equity involved here, alright? ”

October 9, 2012

Developmental Disabilities Service System Task Force

Olympia, WA

My questions:

Given that Senator Kline is clearly talking about closing an RHC and  he clearly states that community services will be more expensive.  Yet, Senator Kline has idea what the number will be of those whose care will be more expensive in the community than in their current RHC home.  This means that he will have to have a threshold of who will receive appropriate care and who will receive negligent care .

1.  How many people will Senator Kline allow to have their assessed needed services in the community?  10%, 25%, 50% 75%?

2. What is the cut off for not having ones assessed needs met?

3. What happens to those who then fall on the other side of that cut off?

4. Do we accept negligent care for them because their care is now too expensive?

Why would anyone consider moving people who are happy in their homes, not requesting to move and have their assessed services met in a cost effective system to an untested and most likely more expensive system?

Isn’t this illogical and unethical?  Well, this is exactly what Senator Adam Kline and others who are pushing for – an  expensive and experimental system change.  Where are the ethicists in this experiment?

Look at the  Code of  Federal Regulations  and ask about the protection of human subjects.  Why are our legislator allowed to play experiments on our loved ones without an ethical review team looking into this.

Is our state allowing clinical trials on our most vulnerable citizens without an ethical review?

Please look at the Nuremberg Code, the Helsinki Agreement and the Belmont Report (A Guide to Research Ethics, 2003) below and tell me why these experiments are even being talking about without going through an ethical review.

The Nuremberg Code has 10 guidelines:

1. Research participants must voluntarily consent to research participation

2. Research aims should contribute to the good of society

3. Research must be based on sound theory and prior animal testing

4. Research must avoid unnecessary physical and mental suffering

5. No research projects can go forward where serious injury and/or death are potential outcomes

6. The degree  of risk taken with research participants cannot exceed anticipated benefits of results

7. Proper environment and protection for participants is necessary

8. Experiments can be conducted only by scientifically qualified persons

9. Human subjects must be allowed to discontinue their participation at any time

10. Scientists must be prepared to terminate the experiment if there  is cause to believe that continuation will be harmful or result in injury or death

Helsinki Agreement

•  The necessity of using an independent investigator to review potential research projects

•  Employing a medically qualified person to supervise the research and assume responsibility for the health and welfare of human subjects

•  The importance of preserving the accuracy of research results

•  Suggestions on how to obtain informed consent from research participants

•  Rules concerning research with children and mentally incompetent persons

•  Evaluating and using experimental treatments on patients

•  The importance of determining which medical situations and conditions are  appropriate and safe for research

The Belmont Report outlines:

1. The ethical principles for research with human subjects

2. Boundaries between medical practice and research

3. The concepts of respect for persons, beneficence, and justice

4.  Applications of these principles in informed consent (respect for persons), assessing risks and benefits (beneficence), and subject selection (justice)

King County Parent Coalition for Developmental Disabilities – Please Respond

Dear King County Parent Coalition Members,

Please read the attached letter and respond.  I have some questions regarding what you are advocating for regarding the closure of Rainier School.

November 28 letter to KC Parent Coalition

I would like to point out that this is not about RHC versus not RHC – it’s about people with DD.  When advocates are going to talk about closing a facility and state there are savings (which there are not) and also say these supposed savings will help with other DD programs, we end up with more of a the same crisis that we are currently in – where the folks who are out in the community lose their services.

The Arc (and others – including the DDC and some DDD administrators)  needs to come to grips with the fact that closing and/or consolidation of the RHCs (whether or not they agree with them or support them ideologically) is NOT a cost-savings measure.  To use this as an argument to encourage others to agree with in hopes of preserving services is a great disservice to ALL people.

So, whether one might ever use the RHC services or not, the RHC issue affects all of us.  This is a critical issue that is falsely represented in order to push an ideology that can not be sustained safely or financially.

Thank you,

Cheryl Felak

Shutter Rainier School?

This proposal is thoroughly lacking in sound judgement.

1.  To close this facility will cost our state millions of dollars – the data that these decisions have been made on have been missing many cost areas and are wholly inaccurate.  Please take a look at the charts here residential Cost Charts for a much more realistic view of the actual costs.   Bear in mind that even these costs do not take into account several critical areas of cost:  Food, Medical and Habilitation.

2.  Aside from the issue of cost – What about the PEOPLE?  Are we not here to help care for others?  Take a look at this essay which illustrates how we recently cared for one of our most vulnerable citizens  Risks outweigh Benefits.  Is this what we want to replicate with moving residents from their safe, stable homes at Rainier?

3.  This IS NOT THE ANSWER – LEAVE OUR STATE OPERATED RESIDENTIAL FACILITIES ALONE – THEY ARE THE BACKBONE AND SAFETY NET OF CARE!

Apples to Apples

I’ve finally gathered enough information to get a close Apples to Apples Cost comparison of RHC to Supported Living.  Even with this comparison the Supporting Living Cost of care is under reported.    On this chart it is clear the scales of economy are in affect.  Compare the cost at Rainier with 372 residents to the cost of care at Fircrest with 198 Residents.

Apples to Apples